9/29/05

10:30 PM Two funny Sophie stories that we have neglected to recount these last couple of days:

1) Yesterday, Sophie was playing with a doll that our friend Mary Gayle gave to Sophie a while back. She is dressed in red, white, and blue stars and stripes, and Elisabeth named her "Liberty." Well, Sophie has given her a new name. Now her name is LuLu. LuLu Chemia. I never in a million years thought that leukemia would be a laughing matter, but from the mouth of our three-year-old, there you go.

2) Also yesterday, we were sitting down to a lovely dinner of leftovers. Sophie asked for Clifford soup (surprise!) and since everything else was already prepared, we sat down for dinner while the soup cooked. We said grace and then Sophie asked, "Where's my soup?" "It's cooking," I answered. "Where is it cooking?" Now, in my defense, Sophie has been the queen of questions these last few days--why is the sky blue? why are you doing that? where are you going? You get the picture. Thinking this was another 3-year old nuisance question, I said, "It's cooking in the kitchen, on the stove. Where did you think it was cooking? In the toilet?" "No," came the response, "I thought it was cooking in the microwave." Touche'

Sophie and Susan had a good day at home today. We are really beginning to appreciate having someone around in the mornings to help out. Both Susan and I are able to get more things done than we have been. Sophie's energy seems to be holding steady, although I continue to worry about her appetite. She barely picked at dinner tonight. I just wish we could find something that would interest her in food.

On a more serious note, it's confession time. Dealing with all of this has been hard. When we were in crisis mode in the spring, it was surprisingly easy to "let go" and rest in the arms of grace that we needed. As Sophie's treatment progressed and our lives returned to somewhat normal (a "new normal" at least), I fell into the "normal" illusion that I am capable of handling whatever will come, that I am self-sufficient enough, that I am smart enough, confident enough, strong enough to get done what needs to get done.

That has been a lie, and I have paid the price for committing myself to that lie. This week as I was running late to class to turn in a paper that was not my best effort on an assignment that I genuinely cared a great deal about, I realized, I'm not at 100%. At best, I'm at 75%. Everything I do, whether it is parenting, or pastoring, or being a husband, or being a student, or being a son, or being a brother, or being a child of God, or simply being a human being, has suffered in some way because I have a child who is being treated for cancer. In subtle and subversive ways, ways often too small to notice, every aspect of my life has been compromised and I have been in denial.

Yes, Sophie's treatment has been going well. Yes, her prognosis is good. Yes, we are handling everything as best we can.

But, yes, I have failed to acknowledge that a lot of my time is spent second-guessing every decision I make. Yes, I have ignored the warning signs of forgetfulness and depression and anger and general malaise that all stem from the trauma we have experienced this year. Yes, I worry about my relationship with the people I love, with my wife, with my daughters, with my sister and my parents, with my friends, and with this wonderful community that has reached out so lovingly to us all. I have been paralyzed by something beyond my control. I have neglected the relationships that would have helped me confront the lie that I am managing this all very well, thank you.

In these last two days, I have, as the parable says, "come to myself." I have come to my senses and realized that I have slowly wandered away to some far away country, away from the place I need to be, emotionally cut off from the people whose love for me and care for me will help me understand who I am and who I am called to be. What has been so shocking these past few days has been to realize just how far away I have managed to wander, without ever intending to wander at all. It's as if moment by moment, day by day, I have slipped off somewhere. It's actually somewhat frightening. We could never have hoped for Sophie's treatments to be going as well as they are, but you know what, having a child with cancer is not something I would ever wish on anyone. Even when the outlook is positive, it is not as positive as the outlook would be if there were no such thing as leukemia, and that is the reality that we live with. It's not pretty.

I'm thankful that for whatever reason, in these last couple of days, I have indeed "come to myself." I know that some friends have noticed that something has been amiss, and I know that some of you have prayed for me in particular. Thank you. Please continue to pray for me and for our whole family. We need your support. We need you to remind us that we are not alone in this and that we are not going crazy when we act like we're crazy. We need you to reel us back in when we get in over our heads or when we wander off. We need for you to help us realize that childhood cancer can never be something you get used to, because we haven't managed to get used to it yet (although, Lord knows, we've tried). But most of all, we need you to love us and keep us in your thoughts and prayers, even in the midst of these days when things seem to be going well.

Comments

Randall, I am so touched by the sheer honesty in your latest entry. I will continue to pray for you, Susan, Elisabeth, and Sophie. I actually think you should have this entry published in some type of health related/parenting magazine as it likely speaks to the experiences of many families who are coping with a child's illness. Depression can be debilitating and your words could help those parents who continue to struggle with "coming to themselves".

Randall I thank you for such an open and honest confession.And although God, our family and close friends realize when we are struggling at different times in our lives it really seems to help to openly confess and bare our feelings. You and Susan have been dealt so much this past year and to be 75% in control of things to many of us is grand. However, I know that we want to be the very best we possibly can no matter what we are faced with. Know that you do have many who are lifting you guys up in prayer, we do understand some of your frustrations but I can't say I completely know how it feels unless my family has or is faced with cancer.Keep your faith and trust in God and He will help us thru.May your family have a wonderful weekend! Love and prayers Deanna

Randall,
Sometimes we are so busy dealing with our life stressors that we are out of touch with how much the stressors have affected us, and it can be quite shocking sometimes to realize. However, it is important to remember that, when you are under such a huge life stressor, you are not going to function at 100% in anything, and that is okay. Don't expect more of yourself than you are capable of giving right now. Be kind to yourself, take those breaks to refuel your soul, and just keep doing the best you can without judging yourself. You and Susan have been doing an incredible job, and I just don't know that you could squeeze more out of yourselves! Remember that sometimes forgiveness is not just of others, but of ourselves :)

Randall--that was a very moving commentary on what it must be like to have to endure this heavy burden all of you hare having to carry. I think I've mentioned in this blog before that I struggle a great deal with issues related to God, religion, etc. Even though I don't know how I feel about prayer (especially "answered prayer") every day on my way to work, I pray briefly for myself and for each member of my family---that God would guide each one of us, that he would help us to make wise decisions, to do our work well, to be safe from harm--and mainly to feel his presence. I hadn't had a chance to read your blog in the past few days, but for some reason--this morning--after I had said my daily prayer for myself and my own family, Sophie came to mind and I found myself praying that God would help Sophie and your whole family this week---that he would remind you of his presence and his love for each one of you in some very real way. I really have no clue (nor will I ever have a clue, I'm sure) as to how or if God actually answers our prayers--I mean, I guess I have to wonder why a perfectly loving God would need to be asked to do something kind for a child) but whatever the reason, it seems to be true that there is a great deal of power (or energy or whatever you want to call it) in knowing that many people are "praying for you" or pulling for you or just wishing you well. You and Susan seem to be aware of all the people...close friends, relatives, and even complete strangers . . . who have read your story and who are pulling for all of you.

Just one other comment...you said that lately you haven't been much of a "good parent, brother, son", etc. I don't believe that's true, but the thing that really struck me is that you said you hadn't been a "good child of God." In my own "spiritual development" (or whatever you want to call it) lately, one thought that has really been present in my mind is what a powerful thing the whole concept of grace is. Perhaps it's all just wishful thinking, I don't know---but recently, during my daily prayer/reflection time, I've really felt kind of overwhelmed by this realization (or belief) that God loves me exactly as I am---warts, flaws, and all. I guess for me . . . I don't think I have to be a "good child of God". What's really amazing to me is that no matter how wretched I can be at times, and no matter how often I fail to live up to my own expectations for myself, God's love for me is not based on my "performance". Rather, I'm God's child because he gave me life and after giving me life. I know this would be considered a heretical belief by many, but I believe we are ALL God's children and that he loves us all equally---not because of our accomplishments but IN SPITE OF of our failure to accomplish that which we think we must accomplish.

Anyway--I apologize for the rambling. It's late, and I've had very little sleep this week due to demands in my job. However, I just read your entry, and I wanted to respond in some way, just to let you know that our family is one more little group that is pulling for your family.